Columns

As I hung up the phone following a short chat with my neurologist, an old saying bubbled up in my mind: “You don’t know what you’ve got until it’s gone.” What was I bemoaning the loss of? My ALS clinic. I’ve been missing the interaction, the idea-sharing, and being…

It’s hard to find guides for the grief that accompanies a long, progressive terminal illness. Loss is often talked about as an event that happened in the past. It’s difficult to process grief when you know you haven’t reached the bottom yet, when the losses keep coming. In Brené Brown’s…

“Oh yes, I am wise, but it’s wisdom born of pain. — “I Am Woman,” Helen Reddy “Gain from pain” is not a new concept. The notion can be traced back several millennia to “The Ethics of the…

I’ve always believed in the importance of having heroes and role models to help me cope with ALS. In fact, I keep a list of names in a special folder titled “ALS Inspiration.” But most of the people on my list don’t even have ALS. What they do have in common…

My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused because I’m my husband’s caregiver, I included doctors’ notes stating that my husband, Todd, is paralyzed. Apparently, that wasn’t enough, because I received a second round…

“Pleased to meet you, hope you guess my name.” — Keith Richards and Mick Jagger, “Sympathy for the Devil” Last week, I experienced an abysmal customer service episode. Lasting the better part of a full workday, the bitter crescendo left…

Lately, I’ve seen an escalation of messages urging me to protect myself from hackers, scammers, and other potential identity thieves. But there’s one identity thief that’s always on my radar: my ALS. That’s because the ongoing symptoms of ALS challenge the very essence of my sense of self. I’ve managed…

“Be nicer,” my daughter whispered to me when I was on the phone telling a restaurant employee my pizza takeout bill was $20 higher than it should be. My tone was apparently sharper than I realized as I went through the math of half off the second pizzas with add-ons…

“I forgot how dark it is all the time,” my brother commented when he visited us in Michigan’s Keweenaw Peninsula over the holidays. The sun was trapped behind cloud cover for the entire week he was here, and some years, it only peeks out occasionally during January with near daily…

“There’s nothing but twigs and seeds, twigs and seeds, And they sure don’t deliver the punch that this ole head needs.” Jesse Winchester is lamenting his discovery that all that remains in his “medicinal” stash are the…